The BLACKSWAN Foundation believes that a stronger engagement at international level is fundamental to attract more resources, create new incentives for research and develop therapies for millions of patients. The #RAREvolution program combines the work and experience developed by the BLACKSWAN Foundation in the last years (the RE(ACT) Initiative, congress and community) with new interventions aimed at integrating its action.
Increasing awareness for rare diseases research and therefore improving the understanding of rare diseases among the public, politicians, health professionals, researchers and academics is one of the main objective of the #RAREvolution. BLACKSWAN Foundation is carrying out, through its digital channels an online communication action, “#RAREvolution: Stand up for scientific research” on the importance of advancing rare disease research.
In collaboration with other rare diseases organizations, BLACKSWAN Foundation also aims at encouraging further progress in the recognition of rare conditions as a public health and research priority and advocate for new and more effective international and national policies. An international petition launched on change.org is part of this action. The petition provides nine points as guidance for the establishment of policies on rare diseases research: